My 11 year ols son was diagnosed last summer with Crohn's after suffering with aniema, weight loss and bloody stools. He is on Remicade and sulfasalazine and lots of vitamins. He is now gaining weight and is growing and all his lab work "looks good." He is even pooping normally now, no blood or pian and once or twice a day. The problem is he still feels like crap. He is complaining of joint pain, lack of energy, abnomnal pain and just feeling bad. This come in waves. He can have 2 miserable hours and then 4 good hours. He is missing more school now than before he was diagnosed. Should I go to different doctor for joint pain? His GI seems to dimiss it. It doesn't help that everytime we see a doctor John is in a "good phaze." I have started videoing my son when he is having a bad episode so the doctor can see it. I wish I could make him feel better.
New member, son with Crohn's
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Angrybird
Moderator
Hello and welcome to the forum. I am sorry that your son has been diagnosed with crohns 
Definelty pursue the joint pain issue with the doc, if he refuses to look into it go back to your GP and see if they can assist. It is something that can happen with crohns but this can then mean there is still a little activity going on. Out of interest how long has your son been on the Remicade? What is his diet like? I know it can be tempting to get a bit lax with this if things start to feel better. Also please check out our parents of kids w/IBD sub forum, there will be a lot of advice and support available here that I think you will find beneficial.
Definelty pursue the joint pain issue with the doc, if he refuses to look into it go back to your GP and see if they can assist. It is something that can happen with crohns but this can then mean there is still a little activity going on. Out of interest how long has your son been on the Remicade? What is his diet like? I know it can be tempting to get a bit lax with this if things start to feel better. Also please check out our parents of kids w/IBD sub forum, there will be a lot of advice and support available here that I think you will find beneficial.
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My son is having joint pain now too. I called our pediatrician and she did some x-rays to check for growing issues (his pain is in the knees). She then referred us to a rheumatologist. We can't get in until May. But I guess that is who deals with the joints. I would talk to your G.I. about how your son isn't feeling well. Do u think it could be a side effect of the meds?
I called our pediatrician and she did some x-rays to check for growing issues (his pain is in the knees). She then referred us to a rheumatologist. We can't get in until May. But I guess that is who deals with the joints. I would talk to your G.I. about how your son isn't feeling well. Do u think it could be a side effect of the meds?
David
Co-Founder
Greetings and welcome I'm sorry your son is having such issues. You mentioned that he is taking lots of vitamins, is Vitamin D one of them by chance and have his levels been checked? The symptoms you describe are common with vitamin D deficiency and such deficiency is extremely common in people with Crohn's Disease. What other vitamins is he taking? B12?
Here is a link to the Parents of Kids with IBD forum Angrybird mentioned. You'll find lots of like souls in there.
Again, welcome. We're here for you anytime!
I'm sorry your son is having such issues. You mentioned that he is taking lots of vitamins, is Vitamin D one of them by chance and have his levels been checked? The symptoms you describe are common with vitamin D deficiency and such deficiency is extremely common in people with Crohn's Disease. What other vitamins is he taking? B12?Here is a link to the Parents of Kids with IBD forum Angrybird mentioned. You'll find lots of like souls in there.
Again, welcome. We're here for you anytime!
